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Old 04-21-2009, 10:58 PM #1
dshue dshue is offline
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Join Date: May 2008
Location: Los Angeles
Posts: 97
15 yr Member
dshue dshue is offline
Junior Member
 
Join Date: May 2008
Location: Los Angeles
Posts: 97
15 yr Member
Default A 'not absolutely certain diagnosis'

So my cross country jaunts have continued in search of a medicine man with answers...

Unlike others, my Hopkins experience, very serious indeed in tone, was, well, just plain wrong on almost everything. This from a doctor called, literally by one of my now guys at UCSF, 'one of the gods of neurology'. Consider me agnostic at best.

Anyway, my gambol up to UCSF, where the docs have been good (administratively though, the absolute worst experience, which is saying a lot given the rather feckless nature of medical offices), have given me the 'I can't be certain, but...' lead that I 'have a postinfectuous immune mediated peripheral neuropathy, selectively affecting unmyelinated C fibers (with impaired heat perception)'.

My full body burning has left only my hands and feet free. My doc, in an interesting tac, suggests that my appendages have been spared because the neuropathy is, heretofore unrecognized, more severe in the hands and feet, and therefore the burning is not present. So hey, I guess they're dead already. Don't know about that one.

There are no real answers though, I know. The cocktail now is to up Mexilitine to 1200 mgs (with Lamictal warming up in the wings) along with Lyrica still at 600 mgs along with a handful of Effexor, and starting with fentanyl patches (leaving tramdol behind), with the suggestion of doing a fentanyl or lidocaine infusion soon, all the while waiting - my LA doc has his own lab, and at UCSF my doc is a big research guru - for at least five years they tell me for new treatments coming to fruition.

So if glentaj is out and about tonight, if you have a moment, could you enlighten me with your always elaborate wisdom on the above diagnosis. I know you've said you've had improvement in your immune related case. I'm post virus one year and not getting any better. What's been the course time-wise of your regeneration, as it were?

And anyone with experience with the patch or the infusions, hipping me to what to expect would also be much appreciated.

Thanks.

-- Dennis
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